Brain Haemorrhage

[Patrick]

Hi there all!

I have been reading since I joined and have enjoyed all of it. I had an AVR in 2003 and I am now at home post brain surgery. Unfortunately I had an AV malformation in my brain that gave up the ghost, July 27th and while it has left my mind and body working fine, I have lost over half of my sight in both eyes. So, I have a new laptop (G4 Macintosh, OSX 10.4) and I have set it up to speak any selected text to me. I use this for email and web pages which seems to work well. Do you guys have any other computer friendly suggestions?

Take care,

Patrick

 

[PJmomrunner]

Hi Patrick.

I don't have any computer suggestions, but I will ask my son's friend whose dad is blind if he has any and get back to you.

If I am guessing correctly an "AV" malformation is an arteriovenous malformation or a connection between an artery and a vein--a connection that normally doesn't exist. What happens when an AV malformation "gives up the ghost"? Is this thought to be related to your BAV?

 

[Patrick]

AVM & BAV

AVM & BAV

Thank you PJ for the offer and yes, you are correct about the AVM. It was described to me as another small congenital abnormality, like my BAV but not linked. I know of no link between the AVM & BAV but perhaps others do? The odd vein forms into a ball of wool type structure that burst or leaked. Sorry about my ?giving up the ghost? comment, I still hate the reality of my brain haemorrhage and I obviously tried to use softer language. It may be an Irish colloquialism?
I look forward to hearing from you.
Patrick

 

[PJmomrunner]

The Bicuspid Aortic Foundation website lists head vessel aneurysms as a possible symptom of BAVD (http://www.bicuspidfoundation.com/Bicuspid_Aortic_Valve_Disease.html), but I guess your AVM is different. I am familiar with the saying "giving up the ghost," I guess I just always thought of it as meaning "giving up," which, I guess is what you meant and I have a habit of overlooking that title part of the post, the part that said "brain hemorrhage." (Duh...sorry.)

Yours certainly is a bitter reality, you have every right to hate it! Is there anything that can be done to improve/restore your eyesight? Will you still be able to run that microscopy department?

 

[Nancy]

I understood the "giving up the ghost", but then I'm from an Irish/American family on both sides. To me it means it went "kaput".

Sorry you have to deal with such a thing. But glad you're here and have some new best friends.

Welcome!

 

[Patrick]

Good questions PJ

Good questions PJ

Hi PJ,
About my sight coming back the answer is no. I was told to imagine a camera being opened and half the film being torn out and thrown away, the camera then being closed and that is the reality of my sight. Tough words from my brain surgeon!
As to the microscopy, it is surprisingly good news. I went in yesterday for a visit and put some grids into the microscope and yes I could still see enough to make an accurate diagnosis. I suppose I am working within a restricted field of view in the microscope so my percentage deficit or blindness is reduced. I had been training another microscopist since my heart surgery in 2003, so I hope we will now work fulltime together. It will be a while yet before I get back to work however. Dealing with the actual physical reality of my work environment will be tough and I am keeping a very open mind as to how things will pan out. Time will tell. Sleep well, as I am the other side of the pond.

Patrick

 

[Patrick]

Thank you

Thank you

Thanks Nancy,
I take your point totally, especially as I have a wife and two children, 10 and 15 years. Nice to have the company but pity about the time difference, however, I look forward to checking in tomorrow morning.
Take care,
Patrick

 

[hensylee]

Patrick, what a bummer. You sound, tho, like you will be able to continue your life and your career. Come on in anytime, somebody's always home.

I am cheering you on from this side of the pool.

 

[Patrick]

Thank you!

Thank you!

Thank you Ann.
Take care, Patrick

 

[geebee]

Patrick,
So sorry to hear about your partial blindness. My dad died at 48 from an AVM so I know how dangerous they can be. Hopefully you have enough sight to continue your work and get around. I just couldn't imagine what to do without my sight but I guess we all do what is necessary to survive.
How is your recovery going otherwise? Are you feeling up to par physically?
Please let us know how we can help.

 

[Patrick]

Struck.

Struck.

Dear Gina,
Thank you for your kindness. I really am struck by the overall kindness and empathy of the VR community response, thank you all.
I had a great visit with my brain surgeon yesterday. He did another CAT scan and bar the hole where my sight tissue was, my brain looks great to him. I asked for a general or long-term prognosis and he said the AVM is all behind me now. The discomfort of nausea, head sensitivity, dizziness and fatigue will all subside with time. I have been very positive but now I feel so much more positive. Physically I am doing great as the only damage from the bleed was to my sight, therefore my arms, legs and memory etc., all work as well as ever thank God. My wife has to do the driving now and because I have lost so much sight, never driving again is much easier to accept. I have lost the right hand side of both eyes and being able to see the blindness it is like walking around with a large sheet of wood 6? x 4? just in front of me to my right. I am training myself to focus on the sight rather than the absence of sight. I realize this probably sounds odd but I am still learning. Last night for the first time I went with my 15 year old daughter into town by bus. We did some shopping and she is still mothering me, talk about role reversal! At the beginning my 10 year old son was well upset as he saw me being taken out of the house by ambulance but we have spent lots of time together again and his confidence in me is back I think.
I made a visit to work last week for a few hours and while it is understandably difficult moving around the campus, I am still able to identify viruses on the electron microscope with relative ease. I still would not let myself loose with a sharp needle and an infectious specimen but hopefully my colleagues will help there eventually.
Just to complicate things my INR has gone a bit haywire and I am trying to get it back up to range. I use a Coaguchek S that I standardize against our local hospital. Each batch of strips is slightly different from each other, plus, my body chemistry has obviously changed after all the surgery and associated drug therapy. Soon all will settle down to calm normality please God!
Thank you for listening to my ramblings, I hope you are all well.
Patrick

 

[PJmomrunner]

He did another CAT scan and bar the hole where my sight tissue was, my brain looks great to him. I asked for a general or long-term prognosis and he said the AVM is all behind me now. The discomfort of nausea, head sensitivity, dizziness and fatigue will all subside with time.

Well, that's all good news! And hooray for the preserved ability to use the microscope too!

Another question for you: I am very near-sighted. So much so that if I remove one contact lens and leave the other in place, after a while my brain will sort of "tune out" the eye without the contact--'cuz it's useless anyway--and my remaining overall vision is pretty good. Since your vision is partial in both eyes is it possible your brain will eventually "tune out" the input that doesn't add to the picture?

 

[geebee]

Patrick,
I am happy to hear about your positive visit with your surgeon. I hope things continue to stay good for you and your vision, if it can't get better, at least doesn't get worse. It sounds like that is a realistic hope for you.
Please take care and keep smiling.

 

[Phyllis]

Hi there all!

I have been reading since I joined and have enjoyed all of it. I had an AVR in 2003 and I am now at home post brain surgery. Unfortunately I had an AV malformation in my brain that gave up the ghost, July 27th and while it has left my mind and body working fine, I have lost over half of my sight in both eyes. So, I have a new laptop (G4 Macintosh, OSX 10.4) and I have set it up to speak any selected text to me. I use this for email and web pages which seems to work well. Do you guys have any other computer friendly suggestions?

Take care,

Patrick

I don't know what software you are using but are you familiar with IBM ViaVoice? I tried it many years ago as my daughter-in-laws father uses it exclusively and it is very accurate as long as you have a good microphone. The link is: http://www-306.ibm.com/software/voice/viavoice/

 

[PJmomrunner]

Do you guys have any other computer friendly suggestions?

I just spoke to my son's friend and he says his dad uses no other devices or programs.

 

[JeffO]

An idea or two

An idea or two

I am a software consultant and as luck would have it, I made a call on a business yesterday called Adaptive Technologies (www.adaptivetech.net) which specializes in products for blind and low vision people. Its President, Gayle Yarnell, is blind and uses a screenreader called Jaws. You can use a Speech program like Dragon Naturally Speaking for controlling the computer and dictating text, but a screenreader can help you hear what's on the screen. I looked up Jaws on Google and the first site that came up was in the UK - I assume that's what you mean by across the pond.

My thoughts and prayers are with you - you sound like you're making the best of it.

Jeff

 

[Patrick]

"Another question for you: I am very near-sighted......."

Hi PJ,
I hope some tuning out will happen with time, but obviously only time will tell. I suppose three months is not very long really. I went into college today for coffee break with some friends in Geology and it was great fun. Good to be alive.
Patrick

 

[Patrick]

Hi Jeff,
Thank you for making that call for me! Very interesting site and I will phone them tomorrow. The UK will be easy to access however, the pond I referred to was actually the Atlantic. As a Macintosh user I am in the minority here. Most use Windows here and I presume sourcing Mac software is considered easier in the USA? Thanks again and I will let you know how I get on soon.
Patrick

 

[Patrick]

Dear Phyllis and Dick,
I had not seen ViaVoice and I looked it up to find IBM make it for Macintosh OSX. That is great help, thank you both.
Patrick

 

[catwoman]

Patrick:

Welcome to valvereplacement.com!
Sorry you've got vision damage. We all fear hemorrhages here, I think more so than the general population.
I work for a newspaper in Fort Worth, Texas. One of our writers is blind -- has been since birth, I believe. She's also been very active in Lighthouse for the Blind, a nonprofit organization in the United States.
Liz may be able to give you some leads on resources. Her name is Elizabeth Campbell and her addy is [email protected]. Tell her Marsha referred you.